Tuesday, November 24, 2009

Straight A's

Morgan got her first real report card today (since Kindergarten doesn't really count) and she got all A's! I am really, really proud of her. Her teacher said she is a pleasure to have in class and she is doing very well. It's nice to hear that with all that has happened in her world in the last few months that she is still a happy, well adjusted child that is doing well in school.

Friday, November 13, 2009

Thank you all

I just wanted to say thank you all for the prayers and well wishes for Victoria.

I did want to stress that Victoria is in no pain at all. She is mildly itchy but it seems to be under control with the prednisone and some benadryl before bed. She is actually back to her old self as far as energy, being happy and her appetite. The week on the medicine was bad, but the last few days (other than the rash) have really been good for her.

While it is extremely hard for me to see my baby girl like this, I really have to give a lot of credit to our wonderful medical team for helping me get through this. I am able to stay calm for her and help her get through all of this because of their support and reassurance. I also truly feel that they care about Victoria which makes me know that they really have her best interests in mind. You don't always find that with doctors, so we are really blessed. They even called first thing this morning to see how she was doing.

So, between the medical team, my friends, family and the prayers and support of my online friends, we are all getting through all of this without too much stress!

Doing better

It seems the prednisone is doing it's job and Victoria is looking much better today. None of the rash has gone away yet, but there isn't any more either. It is also much less red and swollen looking than it was yesterday. It was actually starting to look like it was going to blister, but doesn't look like that anymore. Her face especially is much better.

Here are a few pictures I took this morning (and this is probably about 50% better than it looked yesterday)

Thursday, November 12, 2009

Hospital visit

Well, we spent about 4 hours of our day today in the ER with Victoria.

She woke up this morning and her rash was 100x worse than it was yesterday. I called the pediatric infectious disease doctor's office. Unfortunately, one of the doctors was off and the other one was seeing patients at a different location about an hour from where we usually go. Because of this, they told me to take her into the ER. Our doctor called ahead for us and also called Dermatology to come down and look at her. The concern was that she could have a severe drug reaction called Stevens Johnson syndrome, which can be fatal.

Thank God, after seeing the dermatologist, he does not feel that she has Stevens Johnson syndrome. He feels it is a very severe case of Erythema Multiforme, which can present very similar to Stevens Johnson when it is this bad. The difference is that none of her mucous membranes are affected which is good news. I won't go into Stevens Johnson too much, but I did read about it and it is very scary so I am so very thankful that they do not think this is what Victoria has.

Victoria has been such a champ through all of this. She is feeling really good since stopping the meds but is a little itchy from the rash. The dermatologist gave us a prescription for prednisone. They gave her a dose in the hospital and I think her rash already looks somewhat better. It isn't going away, but it doesn't look as red and swollen. Hopefully the prednisone will do the trick and will stop the progression. We have a follow up visit with dermatology on Tuesday.

The doctor that was off today did come in to see us in the ER. She is hoping that we will be able to find a better drug combination for Victoria and that she will tolerate it much better. Since it looks like most of her symptoms were related to the allergic reaction and not necessarily side effects, if we can find something she isn't allergic to we hope she will not deal with the same symptoms. Some of the nurses and social workers from the group also came over to the ER from the office (across the street from the hospital) with Oreo's, coloring books, crayons, books, etc. for Victoria. They are so great there and really take good care of us!!!!

Victoria really impressed the ER staff when she popped the prednisone pill like it was nothing! It was only a fraction of the size of the other pills she had been taking, so no biggy! She really is an amazing, amazing child. She takes everything in stride.

So, prayers that she is finally on the mend from all of this and that this past week will be history that will not repeat itself.

Wednesday, November 11, 2009

Well, it sounded like a good plan

Taking medicine at dinner time sounded like a good plan, but it looks like we won't be able to try it for a while.

Victoria woke up this morning covered from head to toe in an awful looking rash. Of course I called the pediatric infectious disease doctor and they told me to bring her in right away. The rash (most likely erythema multiforme) can been seen as a reaction to certain drugs including sulfa drugs, which is what Reyataz (one of the two drugs she was on) is. This rash along with her other symptoms over the week of occasional vomitting, severe malaise and hyperbilirubinemia (she is yellow from a build up of bilirubin in her blood caused by the drug not letting her body break it down like it normally would) leads us to think that this is an allergic reaction to the drug rather than just side effects.

So, we have been advised to stop all of her medications right away. We are going to give her about 10 days to 2 weeks to get all of it out of her system and to get back to feeling herself. At that point we will re-evaluate what medicines we are going to try. It looks like Reyataz was causing all of this, so I'm not sure if we will continue with the Epzicom when we restart or try something different. We will definitely be trying a different protease inhibitor (what Reyataz is) with a completely different chemical make-up to try to avoid any bad reactions.

Victoria's doctor feels strongly that in order for patients to maintain long term compliance with their HIV meds, that it needs to be something that just becomes part of their daily routine. If it is causing her so much trouble that she is sick all time and not herself, then it is not what we want. We will find the right combination for her.

We do know that she can swallow pills now though, so we can keep that in mind when choosing the next drug combination. I also hope we can keep with a once a day regimine, but we'll see. If we can do it once a day, we will start with giving them at dinner time like we had planned to try with these meds. For the next couple of weeks though Victoria doesn't have to take any medicine and she is happy about that! She was already back to her cheerful, talkative, crazy self today (well, other than the awful looking rash).

Tuesday, November 10, 2009

Trying new things

Well, it seems like the pill swallowing is working. Victoria doesn't love it, but she does get them down. It sometimes takes her a few tries, but it is still much better than when I was mixing them with things. The capsules are easier for her, so I am also crushing the 1/2 pill and pouring the powder into empty capsules for her to swallow.

The side effects are still pretty bad. She didn't throw up Thurs, Fri, Sat or Sun. but then did again yesterday. Nothing today, so hopefully it means she is adjusting. The other thing that has been bad is that usually about a few hours after she takes her meds she gets extremely tired. And I mean like can't even move tired. Of course I am letting her take a nap, but if she were in school there would be no way she could function. She is usually better after her nap and okay until bed time.

What we are going to try is giving the meds at dinner time instead of breakfast. This way hopefully she will get to her very tired, sick feeling time right around bed time. Then if she can sleep it off during the night and wake up feeling better hopefully she can have better days. I'm really praying this will work because the poor thing has not been herself for the last week. Since the pill swallowing is going pretty good, I think if we can get the side effects under control Victoria will be much better.

On another, happier note - Victoria went to her first tumbling class at the gym where Morgan cheers on Monday evening and she loved it!!! I'm a bad Mom and didn't have my camera, but I'll try to remember next week so I can take some pictures. She watches Morgan at cheerleading practice and has been asking me if she could do cheerleading. I don't think she is ready for competition cheerleading yet (maybe next year), but the tumbling class is something she can do. Victoria and Morgan are doing it together with a few other little girls, and she really seems to like being with the other kids.

Thursday, November 5, 2009

Good news and bad news

First, I want to start off by saying I'm sorry that my last two posts have not been very pleasant and for all of the talk of throwing up.

Now, the good news - we had no throwing up today!!! So, hopefully that will not be a topic that I have to post too much about any more.

The bad news - taking the medicine this morning was not as easy as I had hoped it would be. But, we got it down and that is the most important part. It is only day 3 and I know that as time goes on it will get easier and become more of a routine. We have a few other things to try to see what works best. We'll figure it out.

Wednesday, November 4, 2009

My poor, sweet little girl

What a day.

It started off with me trying to give Victoria her medicine. I crushed the one pill and put it into a few spoonfuls of chocolate pudding and opened the two capsules and put them into another bowl of pudding. I started with the bowl with just the one pill and she fought me the whole time. It took well over 1/2 hour of screaming, crying, gagging, dry heaving, etc. to get just the few spoonfuls down. When that was over I looked at the second bowl and almost wanted to cry. I didn't know how I was going to get her to eat that bowl. So, I took out two of the capsules (of the same medicine that was in the second bowl) and put them in front of her with a cup of milk. I told her if she could swallow them she wouldn't have to eat any more yuckies. Well, didn't she pick up the first capsule, take a big drink of milk - gone. Second capsule, big drink of milk - gone! I couldn't believe it. To think I traumatized her over nothing. So, tomorrow morning we will be trying the pills again with a cup of milk. The pill might be a little harder to swallow than the capsules, so I may have to cut it into smaller pieces, but if she can swallow it our mornings will be so much easier.

Then, she seemed much better during the morning than yesterday. We went to get her H1N1 shot and she did great (I did cheat and put some EMLA cream on her arm before we went so it wouldn't hurt so much). We came home, ate lunch, her and Morgan played - everything seemed good.

At 2:30pm she had her dentist appt. This poor, scared little girl layed in that chair and had 5 cavities filled without so much as a few little moans. She is amazing!!! I could tell she was worked up because she was breathing heavy and her heart was beating a little fast, but she took it like a trooper.

Because she did so good I told her we could stop at Target and get her a new My Little Pony. Well, as we were walking toward the check out she threw up all over the floor! I could tell people were looking at me like she must have some kind of awful, deadly virus (well, I guess technically she does - but you know what I mean) and that I must be a terrible Mom for taking my child out while she was sick. I don't know if she threw up as a side effect from her meds or from everything else she had done today. It was after 3:30pm, so I really don't think it was the meds. I don't know. She was better again after she threw up and ate all of her dinner fine. Well, she didn't eat much steak because it hurt to chew, but she ate all her broccoli and a few helpings of mashed potatoes. I called from work to check in and she was singing in the background while I was talking to Joe. He said she was happy and playing, but did say her teeth hurt a little - gee, you think?

Tomorrow we just get to be home and relax, so we'll see how she does. She is exhausted and needs a good day to rest up. Hopefully we won't have any throwing up tomorrow. It is so hard to explain to her that she has to take her medicine so she won't get sick, but in her mind the medicine is making her sick. How do you explain that to a 4 year old.

And, after all that - after putting her through all that - she still hugged me tight, told me she loved me and was upset when I was leaving for work this evening. This little girl is so, so amazing!

Tuesday, November 3, 2009


Well, we started Victoria on her meds this morning and it was not great.

She will be taking medication once a day (which is really nice) and has to take two capsules and a half of a pill. We started this morning at breakfast. We crush the pill and open the capsules and added the powder to yogurt (we will also use things like pudding, applesauce, etc.). I only mixed the medicine with about half of the yogurt in a separate bowl, so she could still eat the rest of the yogurt normal. She said it tasted yucky, but took it without too much complaint. She is taking Reyataz and Epzicom.

Then about 1 1/2 hours later she started complaining about her stomach hurting and just before lunch she told me she wanted to lay down. I put her in bed and less than 2 minutes later she came out and told me that her mouth spilled in her bed. It was so sweet. She doesn't have the words to tell me she threw up, so it was the only way she knew to explain to me what happened. We cleaned up her and her bed and gave her a nice bath. Then she fell asleep on the couch while I made lunch. I woke her up to eat and she did eat all of her lunch. After lunch she was much better.

I called the Dr's office to tell them she threw up and they said it was okay because it had been about 3 hours since she had the medicine, so most of it should have been absorbed. We are going to see how she does tomorrow, but if she throws up again we may try giving her meds at dinner. This way she has more food in her stomach from the day, so hopefully won't feel as bad or throw up.

The side effects of the medicine usually last for a few weeks while the body adjusts to them, so say a prayer for Victoria that she won't feel too bad during this time. I hope her little body adjusts quickly and these meds work well for her so we don't have to change.

Also, Victoria is getting her H1N1 shot tomorrow and has her first dentist appt. She has been saying her teeth hurt and I know she has cavities, so that isn't going to be fun either. I think she also has to get the 2nd dose of her regular flu shot this week, but maybe we can hold off until next week for that. She has a lot going on this week. Hopefully she won't hate me when it's all over with.